posted
Hello. New here. I recently had a routine blood test recommended by my Tinitus Dr. and it came back positive IgM ant-bodies but The IgG was negative. They said now they will take the Westernblot to really 'verify' if it could be lyme disease. What I'm reading about the disease is that it's difficult to detect in tests. I also remember finding a pretty decent sized (it wasn't pin head sized) deer tick in my neck some 20 years ago (around 14-15 yrs. old) while in the forest in California.
During my teen years I was involved in competitve cycling. Around 16 or so I came down heavy with Mono and was sick for months. Since then I've had constant health problems that seem to be untreatable, i.e. depression ( multiple anti-depressants didn't work), anxiety, eye spasms and twitches (drs' scratch their head on that one), irratable bowel syndrome, cold hands and feet, times of lack of concentration/uncoordination to name a few. I don't really really have any joint or muscle pain besides a little sometimes in the knees after running.
On top of that I recently got Tinitus as well as Hyperacusis (sensitive to loud). Even people talking sometimes sounds distorted in my ears. The only suggestion I get is that I need to go on anti-depressants again and spend some time in a hospital but I feel that there is something more involved. The anti-depressants just make me sicker.
To conclude, I'm a bit confused by the whole testing thing. I got Negative on the IgG which I've read is the test that shows that Lyme disease is in it's later chronic stage which would explain my long history of untreatable health problems. Again, I remember a tick bite years ago that was never checked. Yet, I tested positive for the IgM which I read shows that a newer infection has taken place??? I don't know what to think? I've also read that getting a negative positive might be because it's really the Mono virus that's being detected in the test?? I am now a bit concerned that maybe it could be Lyme but if I get a negative on the Westernblot they won't bother to look or help any farther. Anybody ever experience this? By the way, I now live in Austria which is a hot spot for infected ticks. I believe they also have more bacteria strains here as well. Thnx for any help.
Posts: 128 | From California | Registered: Apr 2012
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Sorry, my eyes spasm and I can't read long paragraphs. However, I think I've ferreted out enough detail to offer you some reply:
First, the IgM and IgG are different for lyme. The IgM indicates persistent, chronic infection.
See the Western Blot explanations in the first thread below.
As for symptoms, they are all classic for lyme.
Yes, indeed, Austria is no stranger to lyme and the strains can vary around the world. Still, with that IgM positive, and your symptoms, that really does just shout "Lyme" --
AND you should also be assessed for OTHER tick-borne infections that often travel together.
(What ILADS is) . . . WHY you need an ILADS-educated, Lyme Literate Doctor - starting with assessment / evaluation.
===================
BIONIC 880 ? There is a doctor (last name starts with a "W") in Germany who is having some good success with lyme - using the Bionic 880. Several from LymeNet have gone there for treatment.
& search Google for: Bionic+880, lyme -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- TINNITUS & HYPERACUSIS
Sorry that these are in your life. There is a good chance, with treatment, that they can be history.
I know of a renowned hearing expert in your country who has done some splendid work regarding tinnitus.
It's been years since I longed to see him but do not recall his techniques -- but it's important to see ONLY lyme literate (LL) specialists, as those who are not LL may have techniques or advice that would damaging for a lyme patient.
The ears simply cannot be pushed with lyme. So be sure to avoid any therapy the forces sound (although "masking" at your own preferred sound level can help).
Details below should explain why I say only LL experts.
Also, you mentioned antidepressants have failed you and failed to address the ear problems. That happens a lot for those with lyme for various reasons, first, it's not depression causing the ear problems, but infection.
Second, the liver is overwhelmed with toxins from lyme - and the ears are the first organ system to be affected by any toxins in the body.
Most antidepressants are very hard on the liver, adding to the toxicity.
Many antidepressants are also ototoxic and can increase tinnitus and hyperacusis, partly due to liver stress, partly due to antidepressants further elevated the NMDA neurotranmitter activity that is already WAY to "excited" from the lyme toxins.
Adequate lyme treatment and support measures often help resolve tinnitus & hyperacusis for many.
MAGNESIUM & FISH OIL are the two best support methods - along with LIVER & ADRENAL SUPPORT.
As you will see, the adrenal dysfunction caused by lyme is often very involved with ears that struggle.
Ear protection around even moderate sound is more important for those with infection and also with certain Rx.
"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.
Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa.
Since this is a chronic persistent infection, this does not make a lot of sense to me. A newly formed Borrelia burgdorferi should have the same antigen parts as the previous bacteria that produced it.
But anyway, from my clinical experience, these borrelia associated bands usually predict a clinical change in symptoms with antibiotics, regardless of whether they are IgG or IgM."
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
posted
false positives are rare. EVERYTHING you say points to lyme. a positive on IgG or IgM is all you need to see. "negative" positives, as you say, are rare, if ever.
Posts: 184 | From taking pills | Registered: Oct 2011
| IP: Logged |
posted
Thanks for all the advice. Keep it coming:) I will be looking into all the info and links given to me.
The one thing that concerns me is being able to find a Lyme literate Doctor here in Vienna. As I mentioned in my post I've had only bad experiences here w/doctors and none have been willing much of any searching or at least referrals to other specialists. My Tinitus Dr. at least asked for a Lyme test which I'm thankful for. I'm just afraid that they'll either downplay my symptoms and not make a proper evaluation and treatment plan or else maybe give me antibiotic treatment that makes me even sicker. I'll have to check this site further for advice. Maybe since Austria has such a big problem with Lyme I have a good chance of getting some help.
Posts: 128 | From California | Registered: Apr 2012
| IP: Logged |
posted
yes, you can thank him immensely for that test. i don't mean to sound negative, but you can fully expect them to downplay your symptoms. they may make a correct diagnosis, but the chances of them treating correctly is zero to none if you are going to someone other than a lyme literate doctor.
do not let them put you on steroids of any kind, including nasal.
Posts: 184 | From taking pills | Registered: Oct 2011
| IP: Logged |
susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
Have you had your Immunoglobulin levels tested? Total serum and subclasses ie IGA IGG IGM. If your body does not make them/if deficient - that can reflect/be misleading on antibody tests.
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
| IP: Logged |
posted
@Susanak-It doesn't appear it was a 'total' serum test or at least I doubt it. They usually don't do that here which is stupid. I don't know why they don't just check the full spectrum when they test for anything. Especially when I have long repeated problems with a low immune system. It would save a lot of time and it's less expensive.
I don't see anything on the test about IGA. The test is in German so I don't know if the names are the same (think they are since it's all from the Latin),,,,but it only says things like my Segmentkernige (unspecific white blood cell count) levels are moderately high 73%, which speaks of some infection going on.
@In19944-concerning the false positive thing....as I said I had Ebstein Bar virus (Mono) as a Teen. I've read that if you've had Ebstein Bar that it can show up in the blood test as positive LgM antibodies??? So, now I'm really confused. What if it's just chronic, dormit Ebstein? If they put you on antiobiotics, yet in reality it's Ebstein Bar virus still giving you problems, well that's probably not a good thing. I think you need a strong immune system to fight off that virus. I've also heard that Ebstein Bar can also cause a lot of a-typical symptoms (depression, eyes, anxiety, intestines, etc.) similar to Lyme. I'm in a little bit of a concerned, confused state as I wait for my Westerblot results.
Posts: 128 | From California | Registered: Apr 2012
| IP: Logged |
susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
Fred - the tests to which I refer IGA IGG IGM and subclasses are not the same as the western blot results. Well same but different.
I am writing of Hypogammaglobulinemia/CVID for which IVIG is the treatment.
Lots of folks with LD have a variation of CVID.
Ask your doctor to be tested.
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
| IP: Logged |
Another question taken from my post. Can Ebstein BAr virus show up as IgM positive on my test since I've had it before,,especially if you get a false positive on a test? Does Ebstein B. also mimic a lot of different syndromes like Lyme, for example eye pain/discomfort, eye spasms, Tinitus, chronic bowel syndrome, anxiety/depression??? Someone told me that so I'm just asking for more opinions.
Posts: 128 | From California | Registered: Apr 2012
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- EBV will not cause a false positive borrelia test. IMO, there are no "false positive" borrelia tests but there are many "false negative" test.
Borrelia is a spirochetal bacterial infection.
EBV is a virus.
Not at all related.
The Epstein�Barr virus (EBV), also called human herpesvirus 4 (HHV-4) can flare along with lyme.
There is no reason to think the two cannot be active at the same time. In a person who has both, they usually are active at the same time, actually.
Most LLMDs know how to address both. Lyme often has many different infections active along with it. That is due to the fact that ticks can carry dozens (or more) pathogens and release them all with one bite.
Also, for those with viruses or other "stealth" infections that may have been dormant for a time, with infection from lyme, those can flare.
Most LLMDs are fully aware of this and know what to do. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
Those symptoms can all be from lyme. Classic lyme.
EBV could also have some involvement and certainly when someone is battling more than one infection, symptoms are likely going to be more puzzling.
----------------
I don't quite understand the context for your saying:
"Someone told me that so I'm just asking for more opinions." (end quote)
Of course, anyone would be wanting to know all the possible answers. Of course. As well they should.
But we cannot wish away lyme or discount its symptoms as not really meaning much just because they could mean something else & we sure don't want lyme.
An ILADS-educated LLMD can help sort this out and figure out the best direction for treatment. You should also be assessed for other tick-borne infections.
There are also things we can do along the way to help ourselves.
First: see the self-care pages of Dr. B's guidelines listed in the "Diagnosing" thread; the "Tinnitus" thread also has many suggestions for finding comfort during treatment.
But infections MUST be addressed. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
posted
Thanks Keebler. Someone just told me that they had read somewhere that a positive IgM can also be from other infections, incl. Estein Bar. Sounds strange I guess. I just don't know what to believe half of the time when I hear or read something. My mind's been racing (another lyme symptom??) I'm also not really sure if I can trust any doctor here in Vienna. Most them seem 'uninterested'. I've never heard of a LLMD here but maybe I'll get lucky. I know they have a Lyme dep. in the main hospital but I've repeately gone to this same hospital for different tests through the years and they never got even close to the problem.
This might be strange but as bad as Lyme is I'm really just wanting to put a 'name' on whatever's been wrong w/ me all these years. I'd like to know who the enemy finally is so at least I can face it. I appreciate all the help and confirmation I'm getting here because since getting the positive testing my mind has been racing (is that also a Lyme thing?) as I wait for the results of the Westernblot test. If it shows negative, then I'll be really confused at what to do next. Maybe fly back to the States (Cal.) and look for a LLMD. Thanks again
Posts: 128 | From California | Registered: Apr 2012
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Fred,
You will get more answers if you can edit in some white space breaks.
I'll break it up now but, in the future, it's best to stick to approx. 3 line paragraphs - and also a break for every new thought or question.
------------------
fred0 posts:
Someone just told me that they had read somewhere that a positive IgM can also be from other infections, incl. Estein Bar.
Sounds strange I guess. I just don't know what to believe half of the time when I hear or read something. My mind's been racing (another lyme symptom??)
I'm also not really sure if I can trust any doctor here in Vienna. Most them seem 'uninterested'.
I've never heard of a LLMD here but maybe I'll get lucky.
I know they have a Lyme dep. in the main hospital but I've repeately gone to this same hospital for different tests through the years and they never got even close to the problem.
This might be strange but as bad as Lyme is I'm really just wanting to put a 'name' on whatever's been wrong w/ me all these years.
I'd like to know who the enemy finally is so at least I can face it.
I appreciate all the help and confirmation I'm getting here because since getting the positive testing my mind has been racing (is that also a Lyme thing?) as I wait for the results of the Westernblot test.
If it shows negative, then I'll be really confused at what to do next. Maybe fly back to the States (Cal.) and look for a LLMD. Thanks again
(fred0 in Austria) -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You say you are waiting for the results of a Western Blot. But you ALREADY had a Western Blot, both IgG (negative) and IgM (positive, indicated chronic, persistent).
I'm confused as to why there was another test done. Would this be the same IgG and IgM testing by the same lab as before?
I see that they are wanting to "confirm" - there is no test that can rule out lyme.
Looking over your tick bite history, symptom history, the positive IgM test, it does seem like the next step is to find an expert.
Sadly, there are so few on the earth.
--------------------
Back to the possibility of cross activation:
I was thinking "test" not "band" -
An overall positive TEST is not likely to be "false" due to other infections.
A few particular BANDS, can sometimes cross react, however. But just because a band may be one that could be reactive from something else, that cannot rule out lyme.
That is why when the diagnosis is made, those bands that are the most specific for lyme are considered first, with the others more suggestive.
See the "Western Blot" explanation in the "Diagnosing" thread.
I have to stop now but others will be along to help.
Today: find your area lyme support groups. They will be your best chance.
Good luck. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
Diagnosing Lyme Disease (&/or whatever else is going on)
Other tick-borne infections and other chronic stealth infections - as well as certain conditions - that can hold us back are discussed here.
The New ADVANCED LABS CULTURE test links, too.
=======================================
Lyme is supposed to be determined by a CLINICAL diagnosis -- from symptoms, history, physical and dialogue exam by an expert lyme literate doctor (LLMD).
(What ILADS is) . . . WHY you need an ILADS-educated, Lyme Literate Doctor - starting with assessment / evaluation. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- In just a couple of weeks, right in your country: -----------------------------------------
You can see the speakers listed. Click on their names and you may find some close to you.
Beyond that, you might contact ILADS and ask if they can give you some LLMD suggestions in your country.
I can�t tell if this is open to anyone, or just doctors. I have to stop but do explore this as an opportunity to attend, get your doctors to attend, too.
If you can�t attend, get some local link for yourself. Maybe make an "informational" appointment with the conference organizer.
See if they need any volunteers and if there are any scholarships, or partial scholarships to even attend one session.
posted
Ok, thanks Keebler. I'm going right now to pick up the end results.
I'm hoping we got some answers here.
It's been 27 years of ???. It's hard to fight something when you don't know who the enemy is.
thnx.
Posts: 128 | From California | Registered: Apr 2012
| IP: Logged |
bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
Fred. You symptoms and story and similar to mine. I, too, was positive IgM and negative IgG. This is classic for people with chronic Lyme and it indicates a chronic / activity infection.
There are sOme good docs in Germany I believe
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
| IP: Logged |
posted
I would like to thank everybody for the help and support I've gotten in such a short time on this forum, especially Keebler.
I got my test results back and the Westernblot was also positive! So I guess that's that.
No reason to 2nd guess anymore although I could still look into other test recommended on this thread.
Looking back at my life I'm estimating that I have possibly been suffering from this disease w/
it's complications for almost 3 decades without knowing what it was.
It's bitter sweet news because I'm relieved to know what I'm fighting but at the same time
I know things won't necessarily be easy either.
I'm staying on this site for support and help for further treatment.
Thanks again!
Posts: 128 | From California | Registered: Apr 2012
| IP: Logged |
'Kete-tracker
Frequent Contributor (1K+ posts)
Member # 17189
posted
A bit confusing, Fred. You wrote: "...it came back positive IgM ant-bodies but The IgG was negative. They said now they will take the Western blot to really 'verify' if it could be lyme disease."
The only way to tell that the IgM antibodies are present (IgM+) & not any IgG ones is to have already RUN the Western blots for borrelia Burgdorferi (or Lyme). The 1st part of the typically run "Lyme test" is a "Lyme titre" (pronounced 'tighter') which is only a #, usually between 0 and 10, which shows your overall anti-body count.
As far as "verifying" that "it could be Lyme [disease]"... There IS no way to verify that it IS Lyme, using serological testing (atleast not yet), but + results for Lyme-specific antibody bands is a good indicator of exposure to the disease.
The best route here, as I see it, is to see a doctor who specializes in Lyme (an "LLMD") & have him/her interpret the results of the Western blots run by a tick disease 'specialty lab' (i.e: IgeneX) along with your whole clinical presentation & history.
You may very well have been infected years ago by the sounds of your symptoms. The sooner you get on a "long-term" treatment plan (several months, anyhow) of appropriate antibiotics, the better off you'll be, in the long run. Good luck!
Posts: 1233 | From Dover, NH | Registered: Sep 2008
| IP: Logged |
I may sound confusing because it's all new to me as of a week ago and I'm probably confused myself.
They gave me only 'part' of the test back last week that said IgM positive, Westernblot to follow.
Then today I got the rest of the test which said IgM Westernblot-positive...or something along that lines.
I'll look into what you're saying as many have also suggested. Just have to see what options there are here in Austria or I'll go elswhere. Thanks.
Posts: 128 | From California | Registered: Apr 2012
| IP: Logged |
susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
Can you type out here your complete results?
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
| IP: Logged |
Then below that is a long conclusion in German basically saying what I've heard here....
That is, "A significant evaluation of Lyme disease can only be assessed in combination with
clinical, therapeutic and careful study of the patient's symptoms and history." (rough translation)
----------------
Now I'm starting to doubt everything.
Again...
The main discomfort which leads to anxiety is IN THE EYES (spasm in eyes, alternate eye lid drooping, retraction of eyelids).
My Thyroid was checked and found ok so the doctors have no clue what this is except as being psychosomatic.
Then pychiatric problems: anxiety, depr. dullness, uncoordination, social withdrawal at times.
Then Intestinal problems: irratable bowel s.
I used to have the symptoms mostly only in the Fall/Winter (except for diarrhea which I've had since I can remember) so I was diagnosed with Winter Depression (S.A.D.).
Two years ago suddenly the symptoms started to be all year around.
Then I got Tinitus.
I don't really show other classic signs of Lyme such as some of the severe pain I'm reading about, i.e. joints, headaches, nor such things as insomnia.
I watched a guy on Youtube who was bed and wheelchair bound because of so much pain.
I have slight knee pain after excercise but basically I've been able to do sports no matter how sick I've felt through the years.
Maybe I should test somewhere else and be looking for other infections?
Actually I'd fit pretty cozy in the Pych. corner beside the fact that they've been unable to treat it with meds., light therapy.
I know I sound confused because I am.
Uhgg, I wish I could just pin this thing down.
Posts: 128 | From California | Registered: Apr 2012
| IP: Logged |
posted
Just to update. I took my results to the main hospital here in Vienna (largest in Europe).
Saw a Dr. and he told me that it is almost impossible to diagnose Borrelien for sure using Serotological testing or for any test in his opinion.
They supposedly get tons of false positive test results.
He said the only way you can know for sure is by the rash on the skin.
He said he could send me to a neurologist to get permission for a spinal tap test yet said those tests are questionable as well.
He did see that I was suffering so subscribed 3 weeks of dyoxycycline for me to try which he said is the standard treatment.
Posts: 128 | From California | Registered: Apr 2012
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic